Saturday, 16 January 2016

BartsMS....Get your focus onto an Unmet Need

It seems that academic neuros are essentially only able to target un-met needs, unless they are helping pharma deliver what ever they want. Targeting RRMS is difficult, given that there are over 10 different DMT. Ocrelizumab may make headway into active PPMS and cut off that route. Soon we will hear if siponimod affects secondary progressive MS, if it does do we stop doing anything as all avenues are sewn-up.Some of you have said "switch focus and do something different".ProfG has been thinking, DrK has been thinking, but can we get the regulators and neuros to do some thinking? If we can, maybe we can do something for people who get missed out of studies.

What do you think? Shall we go for it? Can ProfG get pharma and the regulators to bite and show that the EDSS is not the only answer?Does DrK care, if it brings benefit to pwMS, let's go for it, what do you think ?

MD Of course, it is done !! MSers we need it, and as soon as possible! Has comments made here on the Blog that sometimes I wonder "that person has MS or she is from Pharma or otherwise researcher?", It is not possible for someone to think "ah but there are already 10 drugs for RRMS," then I I wonder when I read comments like this "as well? does this person did not realize that the more treatment options will be much better for everyone?" ...

I get the impression that you think that siponimod will provide the solution for people with SPMS. I'm sure there is more work to be done in that area.

Yes, helping people who are seriously disabled with SPMS is an unmet need. There are lots of us who feel that we have been discarded. Why are people with an EDSS above 6.5 ignored. We exist, we are out there and we need a voice.

If I am honest, as fingolimod did not work in PPMS, one worries that Sphingosine-1-phosphate modulators will not work in SPMS either. If it does them the question what happened in the PPMS trial. However, it may be the EDSS that do notrespond.

I have SPMS and, according to the EDSS, my mobility hasn't changed in the five years since I started using a wheelchair full-time. But that doesn't tell the whole story - it misses that I can no longer write and have trouble turning the pages of a book, it misses the difficulty I have speaking for long before my voice tails off into a squeak, it misses the inability I have concentrating long enough to watch a film. I think many people with SPMS have these problems to different degrees. They are common and measurable and could surely be used to determine outcomes in trials.

I don't want to lose the ability to wash, dress, feed myself, read, type, and all the other things that keep me independent. These upper body functions are vital to maintain a good quality of life.

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Holistic Management of MS ver. 7.0

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